Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Sunday, December 23, 2012

Paint and a poem

Week overview, proud of it!

- Got back to the gym, renewed my membership! Went swimming (for
fitness) for the first time in a year. My bones and joints creaked, but I
just breathed into the aches, and went slowly. It was *awesome*. I look
forward to getting back into the swing of things.

-
painted the wall of Dov's room which he has been asking to paint! That
wall had cute wallpaper of Noah's ark... no longer suitable; he's 14
year's old. He has been asking me for a while. I steamed the paper off,
then filled in holes and painted! Dov painted, too. Came out great. I
even got up on a ladder (but that part was scary).

- went through bags and bags of second-hand clothing which I have had to do for months now and have been procrastinating. Got it all organized with gender, age, and season labels.

-
Took Dov to the podiatrist to take care of his ingrown toenails. I know
this seems like a regular thing mommies have to do, and indeed it is,
but I have such a hard time remembering to make appointments for my
kids. I write it down, they remind me, but my mind is so mushy that I
forget until the situation gets worse.

- Had three
visits with a friend in the hospital recovering from a surgery. Saw the
surgeon from the NF each time (what are the odds of *that*?), and
brushed it off easily. Still makes me feel oogie to see him, though. The
first millisecond of seeing him, I get this bottoming out feeling in my
body, along with surprise. Then we both act as if it is normal, but there is
nothing normal about being chit-chatty with him. I left unscathed.

Each
day was met with EXHAUSTING evenings where I turned in at 7 or 8. The
nanny was here to continue on the evening with the kids. It must be the
CMV that is wiping me out. Or is it? I wonder if I will feel when that
virus is out of my system; I am exhausted so much from all the meds and
everything, I am curious to know if there will be a difference.

Today, Shabbat afternoon, in a poem, if you will indulge me. :)

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Took the kids to the park today.

They skipped, while I knew the walk was too far away.

The little one wanted to play ball with me.

As I sat, he made up rules to play a game together, with however I can be.

The day melted into evening and I knew we must get home,

I wondered how I'd do all that walking, as I sat there on the stone.

A friends' apartment close by,

with dreams of a couch and hot chocolate to soothe my sore thigh.

Up three flights of stairs holds the hope of seeing friendly faces,

A few knocks on the door, I hear my friend snore, we turn around to retrace our paces.

Next friend's house further down the way home,

An answer at the door! Though my friend is not home, her daughter's face happily shone.

We took her up on her offer of hospitality,

I rested, drank hot chocolate; Azriel eventually rested with me.

We stayed until nightfall, got picked up by abba.

I went right to bed, leaving Robert taking care of the children's nighttime saga.

The trade off is this: walking kids to a park on Shabbat afternoon,

Then absent for bedtime intimacy with the children and their loony-tunes.

A life with less trade-offs I dream can be had,

Accepting life with full faith in Hashem, is what I aim for, with my children, and their Dad.

in Jerusalem at Chanukah time

all my guys: Dov on top, Ya'akov on left, Robert, Azriel

Shifra and the Chanukah menorahs!! A collage of beautiful types of light.

Beautiful pictures and a lovely poem. Glad to read so many good things. From the sounds of your days it seems natural to be tired in the evening, especially when you're taking all sorts of medication etc, etc,...

About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

Contact me directly

Networked Blogs

my blog is also here

"footbridge", by Ruth Gresser

Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch